AFO's (Helios and Dynamic Bracing Solution)

AFO's (Helios and Dynamic Bracing Solution)

Daniela Wells

5/4/2013

Hello,



I would like to thank everyone that responded to my post
about the AFO’s (specifically HELIOS and DBS/Dynamic Bracing Solutions), it was
very helpful!


In some of the emails I was asked to add some more
information about myself. So here it goes:


Besides being 42 years old, and the diagnose of Facioscapulohumeral muscular dystrophy, I am 5’2”
tall, 110lbs, small bones. Married with 2 kids, a 7 year old boy and a 2 year
old girl and 2 medium size dogs Schnoodles (Snauzers/Poogles). I work a very flexible schedule from home, my
older child goes to school and my little one goes to day care half a day for 2
days a week (T/T).


I am very independent. While at home, I do not wear my AFO in my right leg,
because is annoying…so I walk around barefoot and if winter in socks. I cook,
clean, do laundry, take care of my kids and sometimes even wash my dogs. I don’t
shuffle while walking. I walk (should I say “normal”) placing a foot in front
of the other …but since I have a dropped foot, it slaps/smacks on the floor
instead of rolling forward. And I do have to pick up my knees/hip higher to
avoid the tip of the toes to touch the floor. Also I stand still without losing
balance for a while with and without my AFO.


I do wear my right foot AFO when going out and to drive
(my car has no adaptations). I go to playgrounds, parks, school events and walk
2 plus hours in groceries and dept. stores (if I am pushing the store cart or
the stroller). When I get home, depending of the day I still have the stamina
of keep going, others my knee and legs are just tired and I have to sit/lay and
rest.


But lately I started to notice I am
more and more hyperextending my knees to keep my balance and getting also more
unstable. And when I do not use my AFO I
tripped 3 times this year (one my daughter ran into me and knocked me down, the
other the dog was behind me and when I stepped back I felt over him and the
other was my own fault since I kicked the chair while swing my legs) This is knew because usually I am very attentive to my surrounds and don't trip over things. I want to add that it has
been years since I fell outside my house, I think last time was 2008 I remember
because I was going to be evaluated for my plastic AFO.



Ok so I want to
change my AFO because I saw the videos and the testimonies of people wearing
the HELIOS and the DBS and they were walking faster, with almost a normal gait
and some running and dancing! Even if all I can achieve is an almost normal
walk, I suppose it would be worth it?? I walk so slow now and also my balance
is not as great as it was…So bottle of the line, I am not doing great but not “falling
apart yet”. :-)
Thanks again
Daniela WellsHouston TX
From: <Email Address Redacted>
To: <Email Address Redacted>
Subject: AFO's (Helios and Dynamic Bracing Solution)
Date: Fri, 3 May 2013 19:09:13 +0000




I am writing to OANDP-L because I
would like an opinion in regards of an AFO.


I am 42 years
old and have the diagnose of Facioscapulohumeral muscular dystrophy. In
2008 I noticed my right foot started to drop and I was advised by my
neurologist from the MDA Clinic (Houston TX) to wear an AFO. I had a custom
plastic one done. In 2010 my AFO broke and I had another one made and this one was never right, I got tired to go to the Orthotics
place to fix it and ended up buying out of the internet a very inexpensive AFO
Leaf Spring by Ossur that works.


I walk without assistance, well with my AFO in my right leg but
started to notice I am more and more hyperextending my knees to keep my
balance and getting also more unstable. I have been losing
balance and tripping/falling quite a lot
when not using it. And also I search for places to grab or hold on to
while walking or standing.


I have been
researching for a new AFO brace and came across 2 products:


1) Ortho Rehab
Designs (HELIOS AFO developed by Mitchell Warner)

2) Dynamic Bracing Solutions (DBS
Braces developed by Marmaduke Loke)


I read their site, plus blogs and
chats and saw videos about them; they seem to be a miracle to someone like me. But
even though it is said they work for people with muscular dystrophy most of the
posts are for CMT, polio, MS and etc.


I know they are extremely expensive
there is why I would like an opinion/advice on them:

- Are they worth it?

- Does someone have experience with
those braces with a patient with Muscular Dystrophy?

- Plus they look very similar and are
advertising the same benefits, any recommendation (would one work better for my
case than the other)?


Thank you so MUCH!!! :-) Looking
forward to hear the replies!


Daniela Wells

Houston TX